Recipe: Life

While I was away on business this week, my Facebook and inbox were flooded with friends telling me about the news. Angelina Jolie’s news that is. You’re probably asking yourself, why would people feel compelled to tell you about a movie stars media attention. Well, the story goes like this…..

In March of 2005, my phone rang and it was my mother on the other end of the line. She had tears in her voice as she told me that she was no longer in remission and that her breast cancer had metastasized to her liver and brain. 2 years earlier they found a large lump and she opted to have a radical bilateral mastectomy in hopes of stopping the cancer in it’s tracks. This wasn’t her first rodeo, it was her second bout in the ring with breast cancer and this phone call made her third! She tried to assure me that it was all going to be ok, but it was loud and clear in her voice that this was going to be a hard fight that she might not win. I threw together some clothes and jumped in the car for the 5 hour drive to be by her side. There was nowhere I’d rather be then supporting her personally. We spent 2 weeks together chatting, watching soaps and just being while she laid on the couch feeling awful from the chemo drugs and the monster inside. I knew I couldn’t stay forever as I had 2 small children and a husband at home eagerly awaiting my return.

I spent a lot of time reflecting on life on that 5 hour drive home. How could a woman be dealt such a horrible hand. 3 diagnosis’ of breast cancer? My Mom was no stranger to breast cancer – her mother battled the disease on two different occasions as well and came out the winner (she’s 93 and doing great). As soon as I got back home I decided I needed to speak to my doctor about my own health. I thought she was my advocate, but her views differed greatly from my own. I sought out a new woman’s health doctor and made an appointment. That day changed my life forever. As I sat in her little exam room and told her my story, her eyes filled with tears. She advised me to see the High Risk Breast Cancer clinic for more in-depth advice and got me an appointment the very next day. I was given a page-full of ideas on how to approach this new found risk and was urged to speak to my mother about having genetic testing. I had never really heard of it, but was willing to do whatever. Thankfully, so was my Mom. She started the ball rolling and we anxiously awaited the test results to come back. When they arrived, our lives changes forever. She was positive for the BRCA2 gene mutation. A group of less agressive breast cancer strains, but still very serious. My new-found advocates urged to keep the testing going and asked that my grandmother be next. She obliged instantly. Her result, positive for the exact mutation. Next up was me and yep, you guessed it – positive. My sister was last and in keeping with the Scarlet Letter (the nickname I gave the mail from Myriad) she was positive too.

Back to the clinic I went with 3 copies of this report in my hand and asking a zillion questions like “when will it be my turn”, “what can I do”, “I don’t want to be a sitting duck”. In 2005, prophylactic bilateral mastectomies were not commonplace. Oh, prophylactic means “preventing” or not medically necessary. I hit the interwebs and spent FAR too many hours looking at options. I don’t know if I even slept for several months, I just recall my nose being pressed to the computer monitor as I looked at stats on Tamoxifen and pictures of mastectomy scars and printed out page after page of medical reports on breast cancer. It was all a lot to take in, but a process I needed to go through to make the biggest decision of my life.

At the end of 2005 I told my doctor that I was ready. Ready to be the one calling the shots – not that nasty breast cancer gene, and that I wanted to have a prophylactic bilateral mastectomy, TRAM flap reconstruction and a full hysterectomy. Basically all parts that made me a woman needed to go. We started the ball rolling with picking surgeons and I spent the next 6 months talking about the big day with plastic surgeons, breast surgeons and OB/GYN’s until the team was assembled (my 3 Amigos as I liked to call them). I had to go through genetic counseling to make sure I was ready for what was about to happen to me. It was definitely no light matter and was taken very seriously.

May 6, 2006 I showed up at the hospital very early in the morning with my husband, Mom, Dad and kids in tow. They wheeled me away after a lot of kisses and tears for an 11 hour surgical journey that would take my risk of getting breast cancer from 90+% to less than 5%. I spent several days in the hospital after that day with tubes and drains and a morphine button that didn’t always seem to work. Ok, it did, but I was in so much pain that the 8 minute intervals between button pushes felt like years. I spent the next couple months unable to stand up straight and shuffling along as if I were a 100 year old lady. It was no easy ride and I wouldn’t wish the pain on my worst enemy. All the while I was dealing with this new body of mine, my mom was still battling her demon. She was so incredibly strong for me, encouraging me and taking care of me when she really should’ve been taking care of herself.

7 years have gone by since that 11 hour surgery. I know that this new body does not make me invincible and I still worry that breast cancer may cross my lips one day, but waking up every day and knowing that I did what I felt was right for me and my health, gives me hope. Hope that advances in medicine to be preventive may give me the opportunity to tell my grand children some day that I managed to live my life without ever having breast cancer.

I applaud Angelina Jolie for coming forward and talking about her decision. It’s not easy to do. After my surgery I would tell anyone with ears what I did which was usually met with the glazed over, deer in the headlights look followed by an awkward look down at my breasts. It’s information that most people can’t wrap their minds around. “You did what?” So hearing that a high profile celebrity with a far reaching audience has done the same and is speaking openly about it has brought me to this post (and a lot of urging from Heidi the past 2 days). I felt that it was time to put it out there – when the media is filled with the uncomfortable information of choosing to have your breasts removed, in hopes that the deer in the headlights look has diminished a little and eyes are wide open to take it all in and absorb it and embrace it.

In closing – follow your heart. There are some things in life that you may feel compelled to do that may not be cool, mainstream, or thought to be too radical, but if you believe with all your heart that it’s right for you, for your health and longevity, you need to listen carefully. It knows the way! Always.

In January 2007 my sister was diagnosed with breast cancer and elected to have a prophylactic bilateral mastectomy and has been healthy since. On February 17th, 2007 my beloved mother lost her 13 year battle with breast cancer but gave our family a gift of genetic information which will help our children and their children make informed choices about their own health and well being. She is missed everyday but her strength and beauty surrounds us always. My grandmother is 93 and a 40 year breast cancer survivor. She’s a true testament to health, courage and strength and I will be blessed to be half the woman she is. My daughter and son will have the opportunity to have genetic testing at ages 16, if they choose. Genetic testing is a choice that is not for everyone and I respect whatever they decide to do whole-heartedly.

Heather, thank you so much for sharing your story. I think you are amazingly brave not only for enduring the surgeries, but also for being willing to encourage and inspire women whom you don’t even know. This is a topic that has weighed heavily on my mind for years because I am adopted and don’t know any family history. And (here goes TMI) at age 44, I’m in full menopause, which puts me at slightly higher risk. So, still don’t know if I want to pursue testing “just in case,” but your story certainly gives me something to think about. Thank you 🙂

Oh Heather. Your story and courage touched me more than you will possibly ever know. I also lost my mother to breast cancer (two bouts, the latter spreading to her brain), and have witnessed my father’s struggle (but win!) over colon cancer. And of course, it doesn’t end there. Grandmothers, aunts, and friends with cancer shadow my life. I gave some consideration to the genetic testing, but truth be told, I swept it under the rug. That was over ten years ago. I exercise and eat healthy with purpose, but I know that only goes so far. Thank you for writing this, it is something I need to face and consider for myself!

It’s a tough choice to have the testing as you almost feel branded if it comes back positive. But knowledge is power and knowing what I did, I knew what needed to happen to make me feel comfortable with my future. I am here for you Liren if you have any questions. I’m an open book. Thanks for commenting darlin! xoxo

You are such a strong and courageous and inspiring (not to mention just plain smart!) woman. I’ve gotten bits and pieces of your story over the times we’ve been together, but it was nice to hear it all laid out here. My sympathy on the loss of your mother. My high five on how you’ve handled this situation for yourself and your family. I love you, girl!

Wow Heather, no words. I’m in awe of your strength, and your ability to take charge of something like this. How scary, and I’m so saddened that you lost your mom by such a terrible disease. Thank you for sharing, I know that your words are capable of saving someone’s life.

Oh, Heather…I am in tears reading this. They are not tears of pity or sadness, but rather tears of pride and admiration. I am so honored to know you and am blown away by your strength and resolve. Thank you so much for sharing your story. xo

I’ve always respected and loved you, Heather. It takes courage to share your story with the world, and I’m so glad you did. You are amazing. I’m glad you’ve had such support, too. It can be so complicated … sigh. XO

Debbie Z.

May 18, 2013 at 10:11 pm

This is only the second time I have been to your blog, and I am so glad I read today. Thank you for telling your story. I am a three year breast cancer survivor and made the decision to have bilateral mastectomy even though my cancer was in one breast only. I have felt criticism from some for this decision- I have often gotten the reaction that my decision was too extreme considering that my cancer was early stage and only on the right side. I have never regretted my decision.. It gives me peace and I appreciated my doctors who allowed me to choose mastectomy over lumpectomy and radiation. I felt that I personally couldn’t deal with the constant surveillance that would have been required to assure that my cancer had not recurred. Your story is an inspiration and my deepest condolences on the loss of your dear mother.

Beautifully and bravely said. I am SO proud of you for writing this, and can only imagine what the ripple effects will be from the many who are inspired and encouraged by your story. You are amazing, and I count is a total gift to have you as a friend!

My daughter had the genetic testing done and as difficult as it has been to have her go through having cancer at her young age; we were so grateful she did not have the hereditary gene. She is already risking sterility from chemo but it’s a risk you take to save your life.

What you did was courageous; I’m not a fan of Angelina but maybe her speaking out will make it easier for some…your speaking out has touched a lot of people in your own sphere and I’m glad you did it Heather. You are a closer and greater evidence of life going on than some distant celeb; here’s to many more years of YOU!!

[…] that she had a double mastectomy after testing positive for the BRCA2 gene mutation. I am inspired by this story from Heather of Farmgirl Gourmet. Sharing her story was brave, and I am so grateful for women that are willing to take their health […]

Wow, Heather, I had no idea. Thanks for sharing this post. I’m still trying to let everything sink in. I’m sure the decision to go forward with the surgery 7 years ago was not easy so I commend you in your bravery and courageousness.

Thank you for having the courage to share your heart and your story with us. I applaud you for making a really tough choice, being confident in your decision, and now sharing it to encourage others. I’m so sorry for the loss of your mother. I know that she will be greatly missed. Very glad that you, your sister, and your grandmother are all healthy and doing well. Thanks again for the inspiring post. Have a wonderful weekend!

Pat hartnett

May 17, 2013 at 1:24 pm

Heather…I applaud you again for the courage it took to follow your heart. You were the first person I thought of when I heard the news of Angelina Jolie. I remember your strength as we walked the 3-day, your story, the love you expressed for your mom…the love & support you received from your family. And of course the energy & humor you shared w/me.
God’s blessings on you for sharing your story w/everyone…I know your words are comforting someone this very moment.
My best! Pat H.

Kim Porter

May 17, 2013 at 8:38 am

Your post today brought me to tears. It is a very brave thing to do…to share such a personal experience with us. Thank you so much for doing so. I’ve always enjoyed the recipes you share, but today, I feel like you’ve become very real to me. In this world where so much is digitized and impersonal, I sincerely appreciate you.

Karin

May 17, 2013 at 8:15 am

Thank you for this post. My 56-year-old mother is currently dying of colo-rectal cancer that has metastasized into her liver and lymph nodes, she was diagnosed and fought breast cancer just two years ago. My maternal grandmother is also a breast cancer survivor. A few weeks ago, I had the genetic tests done and am waiting to hear my results. The idea of having a prophylactic bilateral mastectomy if my results are positive has been weighing on my mind especially since Angelina’s news broke this week. It helps to know that others have faced this difficult choice and have come through it. Thank you for your honesty and experiences. 🙂

Oh Karin! I’m so sorry about your Mother. 56 is far too young!! If you have any questions or want to talk about it, please don’t hesitate to contact me via email. I am an open book about my experience and the choices I made. I know mine are not for everyone, but I’m happy to help in any way I can. heather at farmgirlgourmet dot com.

hi heather – so great of you to share your story. my sister-in-law’s mom fought breast cancer for 20 years and was only in her early 50s when she died, leaving her five daughters wondering about their own breast cancer risk. this is an experience familiar to too many, and being able to have a real conversation about options is so important. thanks for speaking up.

20 years. That boggles my mind. Cancer is such an awful beast! My mother found her first lump in her mid 40’s which is considered very young, I can’t even imagine being in my 30’s and dealing with cancer. So young. Thank you for commenting on this post. I appreciate it so much!!

Sanda

May 17, 2013 at 1:26 am

What an amazing post. I’m so proud of you for not being afraid to speak about these sensitive and very private issues. Because of women like yourself and Angelina Jolie, we are going to continue to go forward and make advancements in everything we touch, empowering other women allong the way. Knowledge is power. Thank you so very much for sharing your story.
You rock!

Thanks for taking the time to read it Sanda. It’s a tough subject to talk about, not everyone can wrap their mind around it and I am so blessed to have the outpour of support from all of you. Thank you again! ~heather

I wish there were the right words, I’ve not met you in person but want to hug you! Does that make any sense. I lost my Mum after a 13 year battle with breast cancer and melanoma in 1996, I’ve been horrified ever since, you have given me a message that I will heed Thank you again and one day I hope I have the honour to meet you in person.

Thank you Lyndsay! Virtual hugs work too. Not all breast cancer is hereditary and even with a genetic mutation in the family line, you still have a 50/50 chance that you got your Dad’s good genes. Listening to your body and being proactive with your yearly girl exams is even more important when your mother has battled and lost to the bc monster. My good thoughts are with you and your health and I appreciate your comments and ((hugs)). a huge XO ~heather

Wow, I am in tears and trying to type. When I read Angie’s story, my first words were bravo. I mean such a brave and powerful thing to decide as a woman. I applaud your decision too, and your strength you hold. I read a negative thing on FB yesterday about Angie, and wanted to punch the person who wrote it….seriously. Who are we to judge anothers decision or body for that matter right? The fact that you all shared this with us is huge to me, helps us to not be afraid to face those decisions, know there are others out there who understand the magnitude of what you have to deal with. My grandmother was diagnosed with breast cancer last year, and her diagnosis really opened my eyes. Thank you for sharing your story. Sending you light and love my friend, Hugs, Terra

Sorry, it was a tear-jerker for me too. My husband told me he was mad at me yesterday – for making him cry. 🙂 The haters will always hate. If her message or my own sparks a few people to step back and take a harder look at their family history and do something to be proactive in their health, then it’s all worth enduring the hate comments. This kind of radical surgery isn’t for everyone and until you’re standing in the shoes of the sitting duck, it’s hard to understand or sympathize. Thanks for reading, commenting and sending hugs. I love you to bits girl! xo ~heather

thank you Carrie. I’ve heard that some people think it’s better to “just get tested”. That was one of the things I heard before I made my choice. Sitting duck is not in my vocabulary. I’m glad she’s coming forward and talking about it. She has the reach that us little guys don’t and I hope her story (and mine) inspire and hopefully shed new light on this subject that’s positive and helpful. Thank you for reading it.

This was so moving to read, Heather. I am very sorry for the loss of your mother. Thank you for sharing this unbelievable story – an absolute act of courage ad a testament to the incredible mother you are. I certainly wish your little family every happiness from here on out.

Wow, Heather! I had no idea. I’m so sorry about your mom, but you are right, the gift of genetic information she left all of you will be treasured by so many in your family. Thank you for sharing your story. What a gift it is for those who read it. xo

thank you Carrie. I used to tell people all of the time, but its a lot for a person to digest especially while standing in front of me. At least reading words is safe and less awkward. thank you for commenting sweets. I love you to bits. ~heather

Oh sister, I am SOOO proud of you for sharing your experience. I can only imagine how putting yourself out there, but this is going to be so inspirational for so many, because you’re living proof why this type of action works. Living proof. So glad you are reveling in it. XOXO

First of all, let me say I’m sorry for the loss of your mother – I’m sure that was such (and probably still is) a hard thing to go through. But the inspiration she left behind to help her family is amazing. I’m so happy we live in a time where medical science has made so many advances where we can even conceive of genetic testing, let alone pinpoint the gene wreaking the havoc. But like you say, eating healthy and exercising are important things that we all have to do so we can stay healthy for years to come. What a moving story, Heather and I’m so glad you shared it!

Thanks Marly. All of the surgical chaos that was wreaked on my body makes for an interesting dilemma in that it’s hard to lose – really hard. But, I have rededicated myself to it and look forward to living a long and healthy life. Thank you again! xo Heather

Susan Lambrix

May 16, 2013 at 1:53 pm

Thank you for your touching post. I am still crying. As a breast cancer survivor…………..10 years I know that we need to follow our own hearts knowing there are those who will not agree or understand our decisions. In the end though, they love us and want the best for us. Breast cancer affects so many, but advances are amazing and the support is wonderful. Again, thank you for sharing. You thoughts will probably have an impact on someones decision down the road.

Thank you for your comment Susan, I’m sorry I made you cry. 🙁 Congrats on being a 10 year survivor – sounds like you may be like my grandmother and will someday say 40 year survivor. My good thoughts are with you on your journey. I hope this story impacts one person, but understand how controversial it is and that some may be turned off to it, but I needed to get it out on the table and with it already being high in media attention, I figured it was a good time and letting Angelina be the shocker may help people have compassion. Thanks for commenting, I truly appreciate it. ~heather

Heather, thank you for sharing your story. I too, lost my mom to breast cancer and share that pain with you. I have not been tested yet but am thinking it may be time…thanks for your openness about your own story. You’re very brave! Best to you and your family…

thank you Karen. Some insurance companies are open to paying for genetic testing, contact yours and explain your family history – you may luck out. The first person in the family to be testing feels the brunt of the cost for starting the markers, just a forewarning. If you have any questions, feel free to email me. I am open about my experience and share my knowledge freely. Best of luck to you!! xo ~Heather

Peggy Langdon

May 16, 2013 at 1:21 pm

Thank you so much for sharing your story!! There have been some women who have expressed disdain at Angelina’s story and hopefully your story will bring this into focus for them..It isn’t all about “Hollywood” and the rich..
May gene testing become as common as cholesterol testing!

Great response Peggy…and I appreciate it. I struggled with whether or not to speak about it in fear that people would either think I was doing a “me too” or would lash out at me for being so radical. I agree that genetic testing should be more commonplace, but the fear behind that is that health care providers would view you as a high risk and not insure you. It’s a bit of a double edged sword that is still a bit controversial. Thank you again for your comment.

Heather, I am just speechless. I saw a huge backlash towards Angelina Jolie after her initial announcement. I feel how brave you both are. So hard to imagine. This post brought me to tears. I am really at awe and feel somehow even closer to you. Just an incredible story, Thank you so much for sharing. No words of mine are really going to articulate and convey my feelings now so I better quit while I am ahead. Hugs, Shulie

Thank you Shulie. Its a hard topic to talk about because everyone has their own opinion about it including the statement I hear a lot “genetic testing is smoke and mirrors”. Everyone should choose what’s right for them and opinions to the contrary should be kept at a minimum – in my humble opinion. 🙂 Thanks for commenting on this, I really appreciate it. Love back at ya! H

Thank you so much for sharing this, Heather. Since hearing about Angelina Jolie, I’ve spent the last couple of days wondering about it all. You’re a strong and courageous woman to be able to stand up to doctors and others who can sometimes make us feel like we don’t know anything. And like you said, we know ourselves better than they do. Bravo!

I’m thinking about looking into the genetic testing. Very curious to say the least. I may have some questions if you’re up to it.

Suzanne Fondl

May 16, 2013 at 12:01 pm

Thank you for sharing your story, Heather. It is one of strength & courage. I’m sorry that you lost your Mother. I know a bit about what she went through, as I am in my 5th year battling Stage 3c ovarian cancer that has met to my bones. My daughter has been my biggest supporter, I don’t know if I could continue to fight without her cheering me on & keeping me laughing. Luckily, I am not positive for either the BRCA 1 or 2 gene. My Drs think that heavy exposure to pesticides when I was growing up is the culprit. It is wonderful that I won’t pass this demon on to my daughter & granddaughters. All you can do is gather as much information as you can & surround yourself with positive people…one day there will be a cure!

Thank YOU Suzanne for sharing your story with me. My good thoughts are with you and I think it’s amazing that you have your daughters support including the laughter which is key to beating cancer. Best of luck to you darlin!! xo ~heather

Heather! Thank you for sharing your story–wow! What a brave thing to do not only for yourself but also for your family and friends who will benefit from the difficult decision you made. Not to mention all the people who are reading those who may be going through the same thing. Love you! xo